Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a […]
Champions
Wow! How? Community as therapy
Social isolation prevents people from getting help. The effect is amplified among people living with serious mental illness. They are the most in need of community support, yet are the least likely to get it in a health care system that is primarily focused on clinical interventions like medication. A recent report by M. Usman, […]
Wow! How? Eating disorder recovery
Thirty million people in the U.S. will have a clinically significant eating disorder at some point in their lives. Treatment gaps mean that only a fraction of sufferers will receive the care they need due to the high cost of traditional, in-patient treatment and a scarcity of mental health professionals available for some populations and […]
Wow! How? Hospital Alarms
Yoko Sen is a musician who, when spending time in a hospital as a patient in 2012, noticed that her cardiac monitor and another patient’s fall-risk alarm created a spooky chord known as the devil’s interval. Composers use it sparingly because it sounds so foreboding. Even in a weakened state, Sen began asking questions about […]
Wow! How? Moebius Syndrome
There are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone’s ability to recognize – and use – those expressions helps them navigate in the world. Historically, people with expressive faces – a big grin, for example – were perceived as happier than those who did not smile […]
Public Q&A: Rare Disease and Rebel Health
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
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